Research Seminar with Argerie Tsimicalis & Jenny Wang, Ingram School of Nursing: Envisioning child-friendly care using puppet theatre: Methodological approach and preliminary findings

Osteogenesis Imperfecta (OI) is a genetic bone disorder causing connective tissue weakening, bone fragility and/or deformities, pain, and quality of life concerns. OI remains largely unknown to healthcare providers, which can cause significant ethical concerns in children’s OI care. Researchers have shown that using play can support children’s efforts to process and discuss their experiences. Children from Shriners Hospitals for Children-Canada collaboratively created a play called “The Hospital of Unhappy Surprises” detailing “bad” hospital environments and children’s vision for an ideal practice. The aim of our study is to create a professionally animated version of "The Hospital of Unhappy Surprises" with the global OI community. We used ethno-dramatic storytelling to elicit children’s voices and transform oppressive scenarios into liberating ones. Children participated in semi-structured, online interviews using print-out puppets where they were shown a preliminary staging of the play, invited to express their experiences, and act out scenes, permitting the fictional portrayal of their lived experiences. Data from child interviews will be presented to key stakeholders (i.e., Advisory Council) comprised of the OI community (e.g., decision-makers, clinicians, advocates), parents of OI-affected children, and former OI child patients to develop the final script. The research team will then collaborate with professional artists to encase the findings in an evocative, high-quality and impactful final product.